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Privacy, Confidentiality, and Health Research: Cambridge Bioethics and Law

Autor William W. Lowrance
en Limba Engleză Paperback – 4 dec 2013
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
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Specificații

ISBN-13: 9781107696631
ISBN-10: 1107696631
Pagini: 204
Ilustrații: 1 b/w illus.
Dimensiuni: 152 x 229 x 11 mm
Greutate: 0.28 kg
Editura: Cambridge University Press
Colecția Cambridge University Press
Seria Cambridge Bioethics and Law

Locul publicării:New York, United States

Cuprins

1. Introduction; 2. Data, biospecimens, and research; 3. Privacy, confidentiality, safeguards; 4. Broad privacy and the data protection regimes; 5. Health care, public health, and research regimes; 6. Consent; 7. Identifiability and person-specific data; 8. Genetics and genomics; 9. Safeguards and responsibilities; 10. Data sharing, access, and transfer; 11. Ways forward.

Recenzii

"Privacy, Confidentiality and Health Research by William W. Lowrance has appeared like 'manna' from heaven... This book is a must not only for bioethics and legal scholars but for policymakers and politicians. It is accessible, reader-friendly and best of all a well-thought-out tool for much needed reform."
--Bartha Maria Knoppers, Director of the Centre of Genomics and Policy, McGill University
"Privacy, Confidentiality and Health Research by William W. Lowrance has appeared like ‘manna’ from heaven."- Bartha Maria Knoppers, International Journal of Epidemiology

Notă biografică


Descriere

Examines how privacy, confidentiality, consent, identifiability, safeguards and data sharing affect the pursuit of health research for the common good.